Crusade by Boise’s Trevor Schaefer for cancer registry nears end

Trevor Schaefer, youth ambassador and founder of Trevor's Trek Foundation, Erin Brockovich, president of Brockovich Research & Consulting testify during an Environment and Public Works Committee hearing on "Disease Clusters and Environmental Health," Tuesday, March 29, 2011 on Capitol Hill in Washington, D.C. Pete MarovichStatesman File

Trevor Schaefer, youth ambassador and founder of Trevor's Trek Foundation, Erin Brockovich, president of Brockovich Research & Consulting testify during an Environment and Public Works Committee hearing on "Disease Clusters and Environmental Health," Tuesday, March 29, 2011 on Capitol Hill in Washington, D.C. Pete MarovichStatesman File

Trevor Schaefer’s seven-year crusade to get a national registry for childhood and adult cancer clusters appears on the verge of success.

Idaho Sen. Mike Crapo got language for what is known as Trevor’s Law included in the Toxic Substances Control Act reform bill. Senate Environment and Public Works Committee Chairman James Inhofe, R-Okla., and Sen. Barbara Boxer, D-Calif., reached an agreement with House members Friday.

The compromise bill is expected to passed the Senate and House next week and go to President Barack Obama, who is expected to sign it. The Senate previously passed Trevor’s Law, but the language was not in the original House bill.

“Trevor’s Law is a huge step forward in terms of our dealing with cancer in the United States, particularly with cancer clusters,” Crapo said. “It is a wonderful thing for Idaho that we have a young man like Trevor who is leading in helping to pass nationally important legislation in Congress. This will benefit many people.”

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Doctors diagnosed brain cancer in Schaefer in 2002 and urged immediate surgery. He was 13 years old. After surgery, radiation and chemotherapy, Schaefer healed. He then began a volunteer campaign to fight childhood cancer and to support cancer survivors like himself.

He was recognized by the Statesman in 2007 as the Treasure Valley’s most courageous person. The Trevor’s Trek childhood cancer pavilion opened in Julia Davis Park in 2015.

Trevor Schaefer has been relentless in his efforts to enact the bill.

Sen. Mike Crapo

Cancer clusters are small areas in which an unusual number of people are found to have cancer.

Trevor’s Law calls on the U.S. Secretary of Health and Human Services to develop criteria to monitor, track and respond to instances of potential cancer clusters in the United States. The legislation creates a mechanism to study and document where such clusters exist, why they exist and who they might affect.

The law seeks to improve communication and data sharing between local, state and federal governments. The Centers for Disease Control also would be required to track cancer clusters and offer assistance as needed to local residents and officials.

Schaefer, now 27; his mother, Charlie Smith, also of Boise; and Susan Rosser, a writer from California, brought the idea for cancer cluster legislation to Crapo and Boxer in 2010. They introduced the original bill in 2011 and similar legislation again in 2013, when Trevor joined cancer activist Erin Brockovich and others testifying to a congressional committee in Washington, D.C.

In a news release, Schaefer said the toxic reform bill is named in honor of the late Sen. Frank R. Lautenberg, who fought for the bill before dying of cancer.